Re: Almost had enough!

[Guest guest]

Hiya, are you doing anything to treat your adrenals. Have you had a saliva test

for them, and also do you have any iron labs ?

I had the same prblem regarding testing my T3, in the end i paid for thyroid

panel and RT3 from genova, its a little expensive but was really worth it for me

as it showed a RT3 problem (which could be the case with you due to being on T4

only for so long if you are not converting)

>

> Hi Everyone I am so glad to have found such great empathy,experience and

advice on this site.

> I have been on 100mcg Thyroxine for many years and even in the beginning never

noticed any improvement.

*************Rest of message deleted by moderator.... (sigh!!!!!) ****

[Guest guest]

Hi there,

OMG I know how you feel (so do we all) - don't give up - get even.

Hang on in there - good idea seeing someone who can test your levels (at least I hope you are having nutritional blood tests) as you will be able to see where you might have deficiencies and it will help no end if you can correct these.

Take care

Best wishes

Mandy

[Guest guest]

ALWAYS insist on getting your blood results sent to you with a

copy of the reference range for each of the tests done. We have learnt from

experience that most doctors have no idea how to interpret blood test results -

all they seem to accept is that if the blood test is ANYWHERE within the

reference range, whether at the bottom, the middle or the top - this means your

results are 'normal' and that you therefore do not have a problem - so they

will then blame your symptoms on something else such as FM, CFS or ME - most of

these are what we call a 'dustbin' diagnosis.

You really do not have to put up with this anymore.

Write a letter to your GP and send a copy to the Head of

Practice. Make it clear that you have gone on long enough with their

'doctoring' that is obviously not giving you back your normal health and that

you now want to take charge of this, and hope that your GP will work with you

in finding the true cause of your symptoms.

List all of your symptoms. Check them against those in our web

site www.tpa-uk.org.uk and list the

'signs' you are showing too.

List any members of your family who have a thyroid or autoimmune

condition.

List your basal temperature for 4 or 5 days before you get out

of bed. Normal is 98.6 degrees F. If yours is 97.8 - this is an indication your

metabolism is running too low and the cause of this is likely to be

hypothyroidism.

List the blood tests you would like done and give him the links

to show the reason WHY you are asking for these specific minerals and vitamins

to be tested - and I would mention here too that should any of these be found

to be low in the reference range, no amount of your thyroid hormone can be

fully utilised at the cellular level. These tests you need are:

·

Low iron/ferritin: http://www.thewayup.com/newsletters/081504.htm

and http://www.ithyroid.com/iron.htm

and http://www.femail.com.au/iron-levels-tony-pearce.htm

·

Low vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403

·

Low vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329

and http://www.goodhormonehealth.com/VitaminD.pdf

·

Low magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf

·

Low folate: http://www.clinchem.org/cgi/content/full/47/9/1738

and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163

·

Low copper/zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf

and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html

Ask him also to do a TSH and Free T3 test, and leave out the

free T4. If he writes on the blood request form '?hyperthyroidism' then the

laboratory will test your free T3. Your free T4 at 19 is high, and this is

often an indication it is NOT converting and is probably causing you symptoms

of toxicity as it is pooling in the blood, with nowhere to go. Get a copy of

your thyroid function tests and reference range for each test done too.

I have a ton of references to show the many, many reasons why a

large minority of patients suffering symptoms of hypothyroidism are unable to

convert T4 to 3, and you can find them in the rebuttal I wrote to the BTA's

Statements on Armour v Levothyroxine (T4) only therapy, and Synthetic T4,T3 v

T4 only therapy - see http://www.tpa-uk.org.uk/tpa_responds1.php

If you feel your GP will continue to look at you as if you are

mad - then it would be worth printing these off to show him and ask him to do

you the courtesy of producing as many references to show that these references

to the medical research is wrong - he will not be able to.

However, to continue….ask for a referral to an

endocrinologist of your choice - you do not have to see an endocrinologist in

your area, especially if their speciality is diabetes and not thyroid disease.

You are allowed to see whoever you wish. To this end, I will send you a list of

'good' doctors as recommended by our members privately. Just give your GP their

name and the hospital they are working at.

Last, post a copy of your letter to the Head of Practice and ask

for your letter of requests to be placed into your medical notes.

Luv - Sheila

My MD regularly does blood tests and tells me that the levels are normal. On my

last visit with me in tears, I asked for further blood tests including one for

T3. He said " we don't do that if your TSH is normal " . I asked if I

could have one anyway and he said it was doubtful if the lab would do it even

if he asked. Mentioned that apparently some people are unable to convert

thyroxine and he looked at me as if I was mad.

Test results last year TSH 1.23 and T4 19, I dont really understand if this is

ok or not.

Sorry to have moaned on for so long but am desperate and also very angry at NHS

treatment.(I now have an appointment to see a Nutrionist in May which is my

last hope of ever feeling well)

[Guest guest]

Thanks everyone who replied, its good to know there is such support when you are

feeling so bad.

Sheila I have asked for all my previous results and I have sent for a Genova

adrenal test. Should I delay doing this though, as I last had steroids in

January?

My temperature has always been around 96 degrees except around 4am its 97ish,

when I wake up because I am too hot. Does anyone else have this problem?

Glad to say I have an appointment in May with Dr.P, although this seems a long

time to wait.

Thanks again

>

> ALWAYS insist on getting your blood results sent to you with a copy of the

> reference range for each of the tests done. We have learnt from experience

> that most doctors have no idea how to interpret blood test results - all

[Guest guest]

>>>>>>·        

Low vitamin B12:  http://www.ncbi.nlm.nih.gov/pubmed/18655403, although a placebo effect cannot be excluded, as a number of patients without B12 deficiency also appeared to respond to B12, administration.<<<<<<<<

I think the conclusion could be better than that.     So feeling better when giving B12 when B12 was in range is a placebo effect.    They do not say whether the in range is high within range or low within range.   If it was not defficient but still within bottom half of range, then surely giving B12 and feeling better is because that B12 was needed and not placebo effect.

What is the matter with these researchers, cannot they use common sense.Surely if something makes you feel better then it could just be because you need more.    Maybe their reference ranges are wrong.

Lilian 

 

 

 

 

[Guest guest]

You need to stay off steroids for approximately 6 weeks before

you do the 24 hour salivary adrenal profile , so you should be fine to do

it now.

I too wake up (almost without fail) at 4.00a.m. - go to the

toilet, and often stay wide awake unable to get to sleep again. This is when I

get up and check the messages. Only occasionally, I do fall asleep again, but I

seem to have got into the habit of doing this. I am now trying Melatonin to see

if that helps. The 3 mgs (which used to help) doesn't work for me anymore, but

the 4 1/2 mgs does work. I have only been taking it about 4 nights though.

Luv - Sheila

Thanks everyone who replied, its good to know there is such support when you

are feeling so bad.

Sheila I have asked for all my previous results and I have sent for a Genova

adrenal test. Should I delay doing this though, as I last had steroids in

January?

My temperature has always been around 96 degrees except around 4am its 97ish,

when I wake up because I am too hot. Does anyone else have this problem?

[Guest guest]

>

> You need to stay off steroids for approximately 6 weeks before you do the 24

> hour salivary adrenal profile , so you should be fine to do it now.

Its great that you answer so many peoples questions, must keep you very busy.

Many thanks for that info I shall do the test asap. Rheumatology prescribed

melatonin for " non restorative sleep " but i could not tolerate it. Most tablets

seem to make me ill, one dose (40g) of predisolone made me really bad. Yet a

steroid injection made me feel wonderful for 3 weeks!

Luv